Two autistic adults talk about adult diagnosis, parenting neurodivergent families and why fidget tools.
Joanne Seymon is an Occupational Therapist, mother of a neurodivergent family, founder of Kaiko Fidgets and was diagnosed Autistic/ADHD at 51 years of age.
“I was finding as you come into menopause or perimenopause or whatever you call it, I was a little bit more out of control in my world. I think as women we tend to push everything to the side; we deal with all our humans and particularly when we have a neurodivergent family our cups are full. It’s full on. It’s a full cup. We are literally going from fire to fire, from challenge to challenge. We tend to focus on others, and we see the stress, the out of control like ‘well it’s just my cup, it’s full.”
This is where Madeleine Jaine Lobsey, General Manager of The A List, and Jo see eye to eye. Both women did not see their own diagnosis coming, they were dealing with their children’s needs with no attention on themselves. Like many women they began to notice the signs of ‘burnout’ and began to suspect they perhaps were ADHD.
Jo said “my head was just so noisy; it always has been. That’s the other thing, it’s my normal, isn’t that how everyone is? Does everyone NOT have ten conversations running in their head?”
Like Madeleine, Jo began the diagnostic process for ADHD and along the way also discovered they were autistic. Madeleine said “I was pretty sure I was ADHD but as I went through the process the person doing the assessment said there was quite a bit pinging for autism. And as I went through the process I think if I hadn’t been diagnosed autistic/ADHD I probably would have been disappointed because I started to hear myself so loudly in what they were saying I thought, this just has to affirm it for me now.”
Sharing that with their communities and world has been a journey. People have said things like “you’re not autistic” or “we are all on the spectrum” … “no way you are autistic, I work with people with autism, and you are nothing like them.” “Why would you find out? You are who you are, nothing changes that.”
Both said the diagnosis was liberating. They can be so much kinder to themselves and that has made all the difference. “I am getting to know me, the me that doesn’t have to mask, the me that doesn’t have to push past things that are not ok for me. I get to choose a lot better what I will or won’t, can and can’t do,” said Jo.
A common story in neurodivergent families, to say it lightly, is a complete breakdown in their children dealing with typical school. Both Madeleine and Jo took their kids out of school after severe difficulties and bullying. Jo explains, “That is how Kaiko fidgets started. My son was in year 4 at the time and was playing with a tangle at school and the kids were teasing him for playing with a toy. He was coming home, and he was crying at night. A typical OT and irritated Mum went RIGHT let’s come up with something that’s suitable. Kai and I then sat down to brainstorm.”
Kaiko fidget tools are designed purposefully to support the sensory need of the person. Many are metal or spikey and began from mucking around with bike chain and other metal bits. Some even give the kind of pressure that someone seeking a level of pain would want and makes an enormous difference with harm minimisation. Jo said “Most of our products have come out of needs-based development so the range is very purposefully for teens and adults. It’s fine for younger kids, they are safe, but ours don’t look like toys.”
Fidget tools make a critical difference in the day-to-day life of someone with sensory needs and the majority of the neurodivergent community. Jo explains, “It’s super clever the way the brain is wired. There are two main parts that operate our brain, there’s the front part of our brain that I call the Bus Driver. It’s the thing that drives the bus most of the time, we think with it, we process information, then at the back of our brain is the fight/flight or survival part of our brain and these two parts of the brain are generally not friends, they don’t play together. So, one is on, and one is off and the mechanism or the light switch to switch between the two is two chemical, adrenalin and cortisol, when we perceive threat or we’re anxious or we’re having big feelings we release adrenalin and cortisol and an ADHDer has those levels really high most of the time. They are high in our brain which switches off that front part of the brain which means we are in fight/flight, and we can’t process. The brain then picks up that it needs executive function or the front part of the brain and hasn’t got any access to it, so it stimulates the part of the brain that moves the body because the by-product of that part of the brain or the movement drops those two chemicals, so as we move we decrease those two chemicals in our brain and allow that front part, our reasoning, our thinking, our planning, our main computer to kick back in.”Listen to their podcast conversation here https://www.buzzsprout.com/2186906/12964518